Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I'm having an incredibly bad day today, sat on the sofa watching telly, DH has taken the kids to see his side of the family. Not only am I sore, I'm feeling very sorry for myself that I could well be depending on people to do stupid little things like open my cans of coke for the rest of my life :(

DHs surprise 30th party was yesterday, I was already in pain then from doing it, then the effort of a party, and being moaned at for being lazy on three separate occasions. Broke down and bawled my eyes out on my mums shoulder. Sick of being in pain, sick of relying on people, and sick of people judging me and complaining that I'm young and shouldn't be struggling so much.
DH enjoyed his party though :)

Beyond My hubbie's 40th this year. Am in a big quandary about what to do as may not be up to much on the day. . for you.

got any good Christmassy photos? needed for ME research charity Christmas cards this year

It's been quiet in here, how is everyone?

I had my first anti-TNF injections yesterday. The first 3 doses are double doses, so increased risk of side effects. I tried to ride through it and go to work but I was puking and just couldn't drag myself out of the house. I feel horribly guilty for the time I've had off for, both medical appts and for general sickness. They are wonderfully supportive but I feel shit about it. :( I hate this condition; I hate the symptoms and I hate the meds.

kinky

Before you accept a diagnosis of fibromyalgia, please look into Adrenal Fatigue and read this book.

www.amazon.co.uk/Adrenal-Fatigue-Century-Stress-Syndrome/dp/1890572152/ref=sr_1_1?s=books&ie=UTF8&qid=1377716913&sr=1-1&keywords=adrenal+fatigue

From what you say about your circumstances, you may just be running on empty. This may well be reversible at this stage without getting into the cycle of anti depressants and other medication that a fibro diagnosis implies.

Hi Lisad, very much the same happened to me. Started off with severe pneumonia/ pneumonitis some signs of lupus and eventually diagnosed with CFS. Looking back I just think my body went wrong, after a long period of stress not dissimilar to yours. I am gradually getting more functional! When the ana test was repeated a year after the first one the result was lower( nearly normal). I don't know what to say but for now get as much help as you can. I now get DPs to help with caring for ds who has sld and ASD. Have you seen a rheumatologist. I think they are the most knowledgeable about Lupus etc. it's hard not knowing what it all means and what the future holds. ( hugs))

lisa As I'm sure you know, some conditions especially lupus are notoriously hard to diagnose. My rheumy says it takes about 10 years from symptom onset to diagnosis. IMHO, treating the symptoms is the best forward when the dx is unclear. It is frustrating though.

Sorry you are in this not knowing limbo Lisad. I presume they do not treat because treatment needs to be very specific. Pacing applies to lots of autoimmune conditions, but it's very hard to do well when the main carer for children without support.
I felt as if the years of caring mostly alone for ds (who needs virtually 24 hr high alert care) contributed to my body failing, and left me not being fully able to care properly anymore, so I feel for you looking after 2 dds with ASD. DPs can under some circumstances be used for house chores especially those that relate to disability, although they are supposed to be only used for child care for disabled children. A friend of mine has DPs to employ a specialist carer for her severely disabled ds after school, and also for a male carer for a boys club. It's worth asking although it means an assessment from SS.

lisa I'm not sure of your symptoms but if you have joint inflammation, a good prescription anti-inflammatory should help.

Hi everyone! I did pop in a few weeks ago but never really said anything, today I just need a moan and virtual hug

My M.E is very very bad at the moment, I'm bedbound and probably functioning at around 5-10% most days. And after a prolonged period of good health and feeling I was actually recovering I'm not handling it well at all. I got married 3 months ago which I know will have been the relapse trigger but I never expected to drop this low again. I was about the same when I first fell ill 4 years ago and it was the worst time of my life- this time around I'm handling it even worse.

Has anyone else been bedbound before? I want to get up and get back to living but my body just will not do it, and although I'm trying to pace all I can actually manage is 5 minutes on here and then lying with my eyes shut for the rest of the day. Am bored out of my mind! And so lonely, I desperately want to talk with my husband but can't even bear him in the same room as it makes my head spin and the noise hurts. His nan died this weekend and I can't even comfort him because I can't stay awake, I feel like the worst person in the world.

I hope everyone else is having a much better week than me and that you all got an extra few spoons today Just needed somewhere to get this out where I know people won't judge.

Hugs, newest. Can't offer much but sympathies -- beyond my experience!

I've been struggling through work exploded week before last, and I had to work through the weekend. Crashed on Wed, but was able to keep going after a three-hour nap. New line manager of the part of my job that didn't explode asked if I'd been to the GP yet haven't, as I'd thought we'd register last week but there wasn't a spare moment. I should be working this weekend too, but just can't. Thinking will try to get DH to stop by the surgery this Friday when we'll be driving right past. Line manager was very kind and put on gentle pressure -- he's very honest about how he's struggling with his new responsibilities and said he wouldn't know what to do if I ended up off sick. Nice to know I'm valuable and hopefully I can manage to take action with his pressing.

Oh Newest that sounds very tough. No wonder you feel fed up and not handling it well((hug))
A lady on a course I attended at the hospital had an unexpected relapse that made her very unwell and only able to go out in a wheel chair for very short periods but she is now functioning much better( walking, teaching part time etc) so hopefully you too will pick back up. It must be very frustrating. I spent almost all my time in bed doing nothing when I was first ill, ( and still need to rest a lot) and I know what you mean about not being able to tolerate other people even nearest and dearest- the noise and movement, but have not been as I'll as you sound.
I suppose at least you theoretically know what to do as pacing is not new to you, and you have got wellish before so know you can getvwell again. Does your new dh understand? My dh took quite a while ( as did I) to understand the need for rest and pacing.
(gentle quiet hug)

hi newest, so sorry to hear you are feeling shit, I crash approx. once a year and it puts me in bed for a few weeks, then I gradually re coup, slowly, it is so frustrating, so I can only send gentle hugs and sppons!!

for everyone else I have changed name, my DS has read my posts, one of which was about him he as been referred this week to mental health services after he came to mine last week with cuts up his arms, and telling me he hears a noise that mumbles most of the time, but on occasions tells him he is bad........... I am worried sick!! :(

Well done raggedy, sounds like you are doing a great job in spite of everything!

Magso luckily my DH is amazing, as are all my family. I'd probably have wasted away by now without them as I can't make food for myself or get to the bathroom! I met my DH a few months before I fell ill with ME so he's never really known me healthy- he stayed during the first 8 months when I was at my worst so he is being a complete star now as he has seen me do it before. Thing is I can't remember being this poorly; it was such a traumatic time and I was so suicidal that my brain has done that wonderful thing of blocking it out. So to me all I know is I was bedbound for 8 months, could barely eat or stay awake then suddenly was much better. I don't remember how I did it or stayed sane, just that I went from that to functioning at 80%ish.

For the time being I'm just giving into it, I tried to push through for a week and realised that nope that won't work so on complete bed rest apart from a tiny bit of computer time and eating/drinking. It gets lonely and I'm so frightened but I know that I have done it before and although it will take time I can do it again. Just wish the anxiety about it all would bugger off!

Oops didn't see your post richteaaddict (amazing name change!). How do you cope mentally when you crash? Does it panic you you won't recover again?

I'm so sorry to hear about your son. No wonder you are worried sick- but hopefully if he is under the mental health team they will be able to monitor and help him. Places like mind would probably be a great source of information and support to you too. Sending a massive hug x

Thanks, newest! It sounds like you are keeping a positive attitude -- and it is good to know you got passed this once before.

Sorry to hear about your DS, richtea. I've had friends and relatives who had issues with hearing voices and things, but was before I knew them (or, for my Mum, before I really understood -- I only knew she stopped being able to make eggs properly and then went away for a while). The positive thing though is that they are under control now, so I know that modern medicine is quite good at this thing. Hope they are able to help him soon.

Something I keep mean to asking but never quite get to on my posts -- how do you make/maintain friendships with fatigue issues?

Being with people, especially ones who aren't friends yet, takes so much energy out of me. But I know that I feel a lot more positive after a talk or time with a good friend, so I would really like to make some nearby. All my good friends live far away. DH took me out for my 40th birthday dinner a few weeks ago, and asked if there was anyone I wanted to invite, and all I have is 'work friends' that I couldn't imagine asking to a birthday dinner. :( There's a Mum and DD in the neighbourhood that I'm starting to get to know, but kept not having energy to do anything about it. They actually came and invited us over yesterday, and my DD had so much fun, but I'm really worn out today.

Raggedy, I know how you feel.
I have been dropped from a circle of ex workmates/friends (sort of ) because I have accepted invitations for meals out, make-up parties and that kind of thing, then I have had to cancel because I cant fight the pain (sciatica) or I am sleepy due to the meds.
I can understand how they got fed up, though.
I cant think of a solution.
This thread, and another have been an amazing support.
to all you lovely posters.
I am sorry I cant be any more help, Raggedy.
Does anyone else have any advice ?

Marking my place because this dropped off my threads. Will read & catch up asap.

Raggedy I think most people with chronic fatigue and pain struggle with this. It's the constant battle between being desperate to socialise yet not having the energy and stamina to do it Do you belong to any support groups in your area? I find having some friends who are facing the same thing is always lovely as it means they understand when you can't see them and empathise with what you are going through.

Most of my friends have stuck by me through this illness and understand when I drop off the radar for ages, but I do try to keep in touch through texts, email when I can manage, the odd phone call. When I'm feeling 'better' we do gentle activities like going for coffee, sitting in the park, watching a movie at home.
With the new lady you have met you could always try and limit how long you meet up for to make the payback less intense? That way you get to have a chat and feel positive without crashing too much afterwards.

Also marking my place.

Ragedy, the friends thing is sooooooooooo hard, I am very lucky in that I have a circle of friends I have had since I was at infant school, they just take me for what I am now, we have nights in I fall asleep, I don't do late nights out, but can manage afternoons, so they adapt to that, neverthelsee, I had to move back home for this, I did live 100 miles away when married, when I got divorced I stayed a year witht the kids, but it was hell......... I had no real friends, my ex family all ditched me, and when I was ill it was just me and the kids, id make them sit on my bed whilst I slept.......it was terrible, so I made the ultimate sacrifice and moved home.(best thing ever for me,) but I paid by my DS wanting to stay with his friends!!- so he is now 100 miles away and ill!!!

we can have a virtual freidnship, I might even share a glass or two with ya, and we can chat from the comfort of our own beds..........let me know anyone if you fancy a good night in!!